Finally got a copy of sleep study

[KATHRYN]

156 minutes of sleep during diagnostic portion of sleep study. 10% in stage 1, 90% in stage 2, none in slow wave sleep, none in REM.

Respiratory events:
14 apneas and 282 hypopneas with an AHI of 113.5, respiratory disturbance of RDI 125.7

Oxygen saturation data:
minimum oxygen saturation during sleep was 66%. 30% of the total sleep time saturation was between 90 to 100. 70% of the total sleep time was with saturation between 80 to 89%.

Cardiac events: none

Periodic Limb movements: None
Heavy snoring and paradoxical breathing was observed.

CPAP titration: Cpap was successfully titrated to an effective pressure of 15, which improved the indices as follows: Improved sleep efficiency from 65.6% to 78.8%, improved sleep architecture to normal with rebound REM, reduced the apnea index from 5.4 to 2.1, reduced the AHI from 113.5 to 16.9, improved the desaturation from 66% to 90%, and reduced sleep fragmentation from an arousal idex of 133.4 to 66.

I have read and understand most of the report, have all of it but just typed out the interpretation part. So, I know I have severe sleep apnea. I have been using the M series plus cpap and mask for all of some nights and a few partial nights, where I get frustrated with the mask leaking.

Questions: What is paradoxical breathing?
From this report it shows the AHI reduced to 16.0 with the pressure at 15, the doctor said she did not want to go higher because most people cannot tolerate it. From what I have read here, getting the AHI much lower is recommended. Also, because I had a previous failed sleep study (failed because I did not sleep - too anxious), she had me take a 5mg valium at the start of the study and also at the start of the cpap titration. Wouldn't valium make my AHI worse than normally, I don't take sleep medicine other than an occassional Benadryl when I can't sleep.
Does the amount of pressure correlate to the amount of mask leaks?

I convinced my dr. I needed a data capable machine, took since 8/28/08 to get my DME to order it, but today I picked up my M-series Pro and ordered the software, card reader, from CPAP.com and got them yesterday. She would not ok an auto. So tomorrow I should be able to see some data from real life sleeping.

Still struggling with the mask thing, but trying to work with the comforfull 2 face mask and alternating with the quattro, when I can't get the other one to seal.

Thanks for any insight you all can give. I can see from my own experience what everyone seems to know, we (the patients) have to take control of our therapy.

[Georgio]

Hey that is really good news for you that you will now have data to see how your nights and treatment goes. When I got my first data I posted some of it here and got plenty of good advice. I tried 2 different sizes of comfort gel masks, now have 3 nights with Opas 360 which I am tolerating well and isin't leaking. I have "Padacheeks" on it. Good luck collecting your data. I'm sure everyone here would like to comment on it!

Georgio

[mymontreal]

156 minutes of sleep during diagnostic portion of sleep study. 10% in stage 1, 90% in stage 2, none in slow wave sleep, none in REM.

Respiratory events:
14 apneas and 282 hypopneas with an AHI of 113.5, respiratory disturbance of RDI 125.7

Oxygen saturation data:
minimum oxygen saturation during sleep was 66%. 30% of the total sleep time saturation was between 90 to 100. 70% of the total sleep time was with saturation between 80 to 89%.

Cardiac events: none

Periodic Limb movements: None
Heavy snoring and paradoxical breathing was observed.

CPAP titration: Cpap was successfully titrated to an effective pressure of 15, which improved the indices as follows: Improved sleep efficiency from 65.6% to 78.8%, improved sleep architecture to normal with rebound REM, reduced the apnea index from 5.4 to 2.1, reduced the AHI from 113.5 to 16.9, improved the desaturation from 66% to 90%, and reduced sleep fragmentation from an arousal idex of 133.4 to 66.

I have read and understand most of the report, have all of it but just typed out the interpretation part. So, I know I have severe sleep apnea. I have been using the M series plus cpap and mask for all of some nights and a few partial nights, where I get frustrated with the mask leaking.

Questions: What is paradoxical breathing?
From this report it shows the AHI reduced to 16.0 with the pressure at 15, the doctor said she did not want to go higher because most people cannot tolerate it. From what I have read here, getting the AHI much lower is recommended. Also, because I had a previous failed sleep study (failed because I did not sleep - too anxious), she had me take a 5mg valium at the start of the study and also at the start of the cpap titration. Wouldn't valium make my AHI worse than normally, I don't take sleep medicine other than an occassional Benadryl when I can't sleep.
Does the amount of pressure correlate to the amount of mask leaks?

I convinced my dr. I needed a data capable machine, took since 8/28/08 to get my DME to order it, but today I picked up my M-series Pro and ordered the software, card reader, from CPAP.com and got them yesterday. She would not ok an auto. So tomorrow I should be able to see some data from real life sleeping.

Still struggling with the mask thing, but trying to work with the comforfull 2 face mask and alternating with the quattro, when I can't get the other one to seal.

Thanks for any insight you all can give. I can see from my own experience what everyone seems to know, we (the patients) have to take control of our therapy.

Hi Kathryn

Great that you now have your report & I'm sure the gurus here will soon chime in.

I am still pretty new at two months in, but my treatment is going well & my initial thoughts are:

1. It sucks that your Dr wouldn't approve an AUTO machine - what harm would it have done her... the Auto machines can still be run in CPAP mode if required anyway.

2. During your titration session, a pressure of 15.0 reduced your AHI to 16 & as you mention, this is still a fairly high value. If my Dr. did not want to increase my pressure beyond 15.0 "because I might not tolerate it..." that would be a strong indicator (at least to me...) that a BIPAP machine might be most appropriate - that way if necessary, you could use a higher Inhale Pressure (IPAP)to reduce AHI below 16 & set a lower Exhale Pressure (EPAP) so that it would not be too uncomfortable. I do not however, know what impact the 5mg valium would have on your AHI...

3. There is indeed a relationship between mask "leakage" and the pressure required to deal with your events - if you have too many leaks, the pressure has to increase just to compensate for the leaks - obviously if the leaks are too high, then the cpap treatment stops being effective. Once you are able to analyze the data on your smartcard, you will be able to see whether you having major leak issues and whether these are driving the pressure higher than it needs to be.

I look forward to seeing what your first night's data looks like - hopefully you will be able to post a couple of relevant graphs.

I have learned so much on here over the last 3 months that I would like to repay, by providing at least "some" advice to people who are even newer than me... but I am still a relative newbie, so I look forward to seeing replies from the real experts, so that I can see how far off base I am...

In particular, I am interested in seeing whether others think you should definitely be using an AUTO machine, or maybe even a BIPAP... either way, you have only just received the machine so it is NOT too late to change it, even if it means getting a different prescription from another sleep Dr OR from your Primary Care Physician.

Good Luck
Mike

[Slinky]

Well, girl, you might say "you got it bad and that ain't good" (but maybe you aren't old enough to remember that song and its lyrics).

Yeah, my understanding (and I could be wrong) is that the Valium "could" have affected your sleep and "possibly" affected your evaluation and titration data somewhat - but as severe as your data was I don't think that Valium made that much difference. I'd be willing to bet you'd STILL be in the severe category. I'm guessing that your doctor's reluctance to set your pressure higher than 15 cms despite that pressure NOT reducing your AHI to 5 or below had to do w/both the need for the Valium AND the fact that yours HAD to be a split night study due to the severity of your desats and number of events.

The doctor's reluctance to okay an auto and "only" a fully data capable CPAP may well have had to do w/concern that since you were interested enough to insist on full data capability and obviously intended to educate and inform yourself that you "might" have used that to perhaps try making some adjustments yourself or at least switch to auto mode when he/she wasn't entirely sure of just how much the Valium and the split night might have affected your evaluation and titration data.

I'd guess a good two weeks or month of data sleeping in the comfort of your own home and bed after finding a mask reasonably comfortable w/at least a decent leak problem would make the doctor a lot more comfortable w/your being provided w/an autoPAP and possibly an at-home titration w/an autoPAP.

Try to be patient and concentrate on finding THE RIGHT MASK for you, at least one that is reasonably comfortable, and that doesn't leak too much. Your data will be MUCH more accurate and reliable then.

Patience, Persistence and a good Sensor of Humor and you'll get thru this and find your optimum therapy settings!!

[KATHRYN]

Georgio, thank you for your response. I hope to learn enough to manage my therapy.

Mike, thanks for all the information. I got my first nights info printed, but will have to do a search to figure out how to post it.

Slinky, yes I am old enough to know that song. I got my first nights data and will post the graphs as soon as I figure out how. Have a busy day today, so may not get to it till this evening.

A short recap is: Put mask on at 11:01pm got up at 7:56am. pressure at 15 with ramp at 8 for 45 minutes. c-flex at 3.
I remember waking up and feeling the mask leak and adjusting by pulling out and letting it settle back to my face several times during the night.

This is from the daily details graph
OA: 1.6
H: 0.5
VS: 2.9
AHI: 2.0

Leaks: Average leak 39.00 on the other graph shows:

This is from the long term trend graph

Average max leak: 120.0
Average 90% leak: 46.6
Average leak: 39.1
Average large leak: 0

[Georgio]

I found this defenition: “Paradoxical, or reverse, breathing is one of the most challenging of faulty breathing techniques to correct” says Jennifer Harris of Buteyko Breathe Easy. Jennifer went on to explain that with healthy breathing the area between the lower ribs (stomach area) bulges out on the in breath and deflates on the out breath. “This is healthy diaphragmatic breathing” she continued. “The upper chest should not move at all. When a person has paradoxical breathing they physically reverse the normal breathing process and suck in the upper abdominal muscles (the diaphragm with them) on the in breath and force their “tummy” out on the out breath. This unhealthy breathing technique engages the upper chest and results in hyperventilation. Invariably these people breathe via the mouth which adds to the hyperventilation. Paradoxical breathing is almost always present in clients with sleep apnea and very often with those folk suffering from panic attacks and asthma and many other distressing conditions.” “I have seen amazing improvements in respiratory disorders once this detrimental breathing pattern is corrected”

I will defer comment on your numbers to those more experienced, however it appears your therapy is on the right track. You may need another mask if you struggle with the one you have. Post your report and some here can help judge the effectiveness of your settings.

Georgio

[jnk]

I too will throw in my 2 cents while we all wait for the data-interpretation gurus to get here.

I would say you have every reason to rejoice! Your study proves you will benefit tremendously from PAP therapy. You may have lost a few skirmishes for bipap and auto, but you won the war--you got a machine that gives the data you need to make your therapy work! THAT's what matters.

I wouldn't worry about the paradoxical breathing. For one thing, some amount of shallow, out-of-sync chest-breathing is common for OSA sufferers. For another thing, the anxiety of a sleep study can make it worse. After all, a sleep study is the closest thing to an alien abduction most of us will ever experience. "Come into this strange room. I will now attach these wires and stare at you through monitoring devices as I experiment with shooting air up your nose--FALL ASLEEP NOW!!!"

If there is too much leak from your mask, the numbers you get from your machine for AI and AHI won't mean much. So low leak is probably priority number one if you are having a lot of leak. I don't know enough about your machine and mask to judge that from the numbers you gave, but it looks high to me. As Slinky said above, the right mask that is the right size for YOU is the big thing to accomplish now. Having the right mask is a large part of what makes the difference between successful therapy and giving up, for a lot of people.

45 minutes seems like a long time for a ramp. How long does it take you to get to sleep? If it takes you 15 minutes, set the ramp for 20. You want the ramp to be going when you fall asleep or your odd breathing during the transition to sleep will be counted against you in your numbers, but you don't want the ramp to go so long that the machine will miss counting events that occur while you are asleep.

Don't worry too much about the drugs and the conditions of the sleep study. The sleep study got you what you needed to go from here and to see what affects your AI and AHI. You are well on your way.

We are all happy for you and are here to support and help any way we can. Keep at it.

jeff

[KATHRYN]

Hi Jeff, you really made me laugh about the sleep study analogy. I will try lowering the ramp time tonight to about 30 minutes. My falling asleep time varies. I don't really know what the mask leak numbers mean. I know there is an intentional leak rate, but I didn't see anywhere in the software to list what mask I use. I think I will try the Mirage Quattro tonight and the lower ramp time and see what I come up with. Thank you for replying. I appreciate the encouragement.

[jnk]

. . . I don't really know what the mask leak numbers mean. I know there is an intentional leak rate, . . .

The intentional leak rates at 15 cm for the masks: ComfortFull 2 is around 34 lpm and the quattro is around 45 lpm. Anything above that your machine records is actual leak, but naturally some leak will occur. So just subtract the intentional leak rate number from what your machine gives. At least, I think that is how it works on those machines. It is a little different with the ResMed I use.

Straight CPAP with pressure relief for exhale is not that bad if you end up keeping that machine. But remember the advice above that often one only gets 30 days to be able to trade in the machine one gets. And remember that making your case for bipap or auto may be easier once you have TRIED what they gave you. Just make the case soon if you're gonna make it.

I wish you all the best, KATHRYN.

(Glad you laughed at my alien analogy, seeing as how you're from NM. )

[Slinky]

Call your insurance company. Ask them what local DME CPAP suppliers they are contracted with. HOPEFULLY, you will have the option of more than one so you have some bargaining/negotiating room to try for an autoPAP.

Also talk to your family doctor to see if he/she will PLEASE write you a script for an autoPAP. Your set pressure is 15 and you have C-Flex so have him write the pressure range at 11 and 15. (You''ll probably have to explain to him your C-Flex setting is 3 and that C-Flex is exhalation pressure relief so the bottom range of your autoPAP setting needs to be 11.) Hopefully, he won't catch that 1 cm difference in math. Or explain that the DME may try to wheezle their way outta providing an autoPAP if the pressure range is only 3 and that the pressure range must be at least 4. (I don't know that it does but it would just make things easier w/the DME if they can't use the excuse you don't need an auto 'cause C-Flex of 3 will provide enough range if your pressure range is set at 12 to 15).

[gasp]

Because I have asthma, and have difficulty exhaling under continuous pressure so I was able to get a Respironics A-Flex that has an exhalation relief feature.

[KATHRYN]

Hi again, I seem to be tolerating the pressure of 15 on straight cpap with cflex set to 3, so I think I will stay with the machine I have. What is causing me the most problems is the noise of the leaking of the mask. The air noise and the "farting" noise, then I spend however much time it takes to adjust and then try to get back to sleep. The comfortfull 2 leaks around the sides of my mouth when on my side. If I tighten the straps more, it still leaks, but the edges of the mask are uncomfortable. I tried the Mirage Quattro while awake for a while yesterday and never could get a seal on it. Can anyone give me any other thoughts on the next mask to try?

Here is my data for the second night.

Used machine from 11:11pm to 1:16am woke up and got up until 6AM

CPAP pressure 15
NR 0
FL 0
OA 2.4
H 0.5
VS 7.2
AHI 2.9
Average leak: 38.00

Used machine from 6:12AM to 9:31AM

CPAP pressure 15
NR 0
FL 0
OA 3.6
H 0.9
VS 0.6
AHI 4.5
AVERAGE LEAK: 41.00

The second night was split as I woke up and couldn't go back to sleep, so got up and went back to bed at about 6AM. If anyone can tell me about the leak rate and vibratory snore that would be helpful. A silly question, does the machine pickup the mask noise as VS or how does it sense the snoring for the VS index?

Thank you,

[Georgio]

If the intentional leak rate at 15 cm for the ComfortFull 2 is around 34 lpm..... am I correct to subtract her Avg. leak ranging from 39 - 41cm resulting in actual leak rates of 5 -7cm?

Sorry that you have leaks. This seems to be one of the biggest challenges. Does anyone think she could go toward a nasal or even a pillow type mask and tape her mouth if needed at that pressure of 15......to help eliminate leaks?

Maybe someone here titrated closer to your 15 number has mask advice. I don't know if mask leaks could be interpreted as VS...except mask leaks are no good. Stick around and you'll get there.

Georgio

[KATHRYN]

Thanks Georgio,
I am still hanging in there. This afternoon I got out the Mirage Quattro again and finally got the top straps adjusted with the cushion away from my face until the air pressure came through, then let it fall against my face, then adjusted the bottom strap. I layed down turning from side to side and didn't hear any leaks for about 15 minutes. I didn't fall asleep, so will use it tonight and see how it goes. I did this without the card in so all my experimenting won't show on my values and won't mess up data with extra sessions.

[jnk]

My titrated bilevel pressure was 16/14 but the doc changed that to 16/12 when I asked why standard protocol of 4 cm between pressures wasn't being prescribed. And my first machine was straight bipap, not an auto. So my pressures were up there with you. And I had trouble with my full face mask. So I'm just gonna pass on to you a few things I found to be true for me with full face masks. I have a feeling you already know all of what I'm about to type. But I'll type it anyway in case it helps you somehow or helps someone else fairly brand new. Maybe someone else can contradict or elaborate if they've found a better way, since much of what has been true for me may not be true for other poeple--I don't know.

When I first put on my full face mask to get the adjustment on the straps right, I left the mask very loose. Counter-intuitively loose. "This thing is gonna fall off my face" loose. Then I would lay down on my side with the pillow only touching my face, not my mask. For me, that meant I needed a foam pillow with a squared edge so the mask could hang off the side. All this was done with the machine off. Then I turned the machine on when I was in sleeping position. The pressure from the machine inflated the mask so that it made a seal. (That's why it has to feel loose before the air starts blowing.) If I got a leak, I would first try repositioning my head a little by lifting off the pillow to see if pushing my head forward or back helped. If it didn't, I would play with the straps while still in sleeping position. If I tightened, I tried to tighten the smallest amount possible. And I didn't worry about keeping things symmetrical. (Hey, I know my head isn't perfectly shaped, so why should the straps on my mask be perfect?) I found that I needed to relax and find the right angle for my head when I slept on my side. If I heard a leak, sometimes just tilting my head back made all the difference. Once I did that a few nights, I didn't have to fiddle as much.

The problem with full face masks is that they have to be pretty close to the perfect size for you, in my opinioin. But when you get the right size and shape, it isn't that hard. You don't have to fight with it so much. It's all about where the mask sits on your nose and in the dip between your bottom lip and chin. If your mask isn't the perfect make and size for you, you have to compromise between getting one of the spots perfect and the other one being a little off. The right mask will virtually fall into place on your face and do all the work for you. The only face mask that did really well for me, was, believe it or not, the single-use face mask used at the sleep study. I brought it home with me. It did better than the other two masks I had, so I ended up going back to it and using it for about a week straight.

Then I ended up trying nasal pillows and my life got simpler immediately. You would have to make sure you were doing something to prevent mouth leaks, but nasal pillows work great for me. I use a mouth piece that keeps my jaw forward and my mouth shut. Then I put a cotton sports headband around the crown of my head and the front of my chin to push my bottom lip up enough to prevent lip flutters. The nasal pillows I use have headgear that sits perfectly over top of the headband, so that cuts down on the red marks from my sleeping with my cheek against my bed pillow most of the night. In fact, nasal pillows work so well for me that I may have to change my tagline, since my face no longer makes offensive noises. Well, not while I'm asleep anyway!

That may be more info than anyone would care to read about what I did to get where I am. But that's what I found and where I've landed, for whatever it is or isn't worth.

Hope maybe some of the above is helpful. If not, I hope someone else has something helpful to say. But I guarantee you'll eventually find the exact hints you need to make it work for you if you keep reading here and searching past posts in this forum and trying things. I consider this forum to be the best read out there, myself.

jeff